Evelyn was diagnosed with a Hypothalamic Optic Glioma on October 29, 2010. At the time, she was 6 1/2 months old, had just started to sit up on her own, was smiling and laughing, had doubled her birth weight on cue, and was our first experience with the words "brain tumour".
Those first days at SickKids are frozen in time for Paul and I. They seem so rushed, so blurred, and yet we can picture ourselves back there, in our room on 8D (and then 8A) so vividly. I can remember seeing the outline of Paul standing at the window as the daylight shone in our room in the early morning, making calls to those closest to us, briefing them on what was happening. Those phone calls, I can only imagine, were horrific to receive. I lay on the parent bed/couch, glancing back and forth at him, and then at our sleeping baby, so fragile looking in a big bulky metal crib. I could hear him start to talk, and then stop for long periods of time. I imagine him explaining, yet not really knowing how yet. We were so naive. We had little clue of the reality we were facing at that point. We were so new, in uncharted territory...or so we thought.
I have heard this referrence before, "we belong to a club that nobody ever asked (or wanted) to join". We felt so alone, and yet knew that there were others out there going through the same thing. We have been in a place where we felt singled out - different from everyone else. All of a sudden a new label attached to our family, knowing that we were talked about in a different light. But in the past 15 months, we have also been distant spectators as two other families have gone through diagnosis, and now treatment (or in one case, a lack thereof).
When Evie was first diagnosed I had no real interest in "connecting". Let's be honest, Paul and I didnt even want to see the MRI scans - it was just too much. It changed quite suddenly for me. I had debated support groups, and was not convinced it would be a good fit for me. I now have "others". And it is nice. Nicer than I imagined.
I connected with J's family first. They saw an email I sent that was published in a newsletter. J was diagnosed when he was the same age as Evie. He is now in first grade, and doing really well. He has never relapsed in his treatments, and other than a need for growth hormone regulation, seems to be doing wonderfully. He is a very busy, happy little boy.
I met K and her Dad only a few weeks ago. She also shares Evie's diagnosis, and though a little shy, she is a lovely little girl. Her Dad and I have talked a lot when we meet up in the clinic, and it has opened my eyes (sometimes a bit harshly) to the reality of our future with Evelyn. K is 4, was also diagnosed around 6 months, went through her initial 60 week treatment, and remained stable for almost 2 years before a "routine" MRI scan last May showed further growth. She is now on her 2nd course of treatment, another 60 weeks.
S is a story that I find hard to try and share. I feel as though we were destined to become a part of each other's lives, there were just far too many coincidences along the way. Though S does not share Evie's diagnosis, I share many of the same feelings as her parents. S is dying. Any day now really. She has DIPG, Diffuse Intrinsic Pontine Glioma. Essentially a tumour that is wrapping itself around the brainstem, with a 0% survival rate. It is killing her, slowly, and painfully. S will be three in April.
Just before Christmas we became aware of N. She is my cousin's (other) grandmother. She was also diagnosed with a brain tumour and within days underwent surgery. Though they took out 80% of her tumour, and she has been recovering remarkably well after surgery, she is still expected to live only another year or so. The tumour is just too devastating.
What Paul and I have learned through the past 15 months, is that it is not uncharted territory, as we once thought. It was simply new to us. As with most things, once you're eyes are opened, you realize that you are in fact surrounded. I simply cannot believe that this is happening. Now, two of my "others" I surely only met as a result of Evie's diagnosis. BUT, the other two.....they just happened. You think "not me, not us" - and it's so dumb, because of course you never acutally think anything is going to happen to you or your family. Isnt that naive? It's happening, all around us. Who exactly do you think its going to happen to you? Why do you assume that you have an invisible shield, a protective force. You dont. It's happening. I sincerely hope it doesnt happen to you. This is something I wouldnt even wish on my worst enemy. It's awful, and it's just not fair, but it's happening, perhaps you just need to open your eyes a little wider and take a look.
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